For my son's night-shift nurse who changed my life without saying a word. I am paying it forward, and I thank you.

Monday, November 17, 2008

the appointment

Half way there realized I didn't have his tubing to hook up to his mic-key button. Call GI, leave a message. Get there, they say he has to be put into the system before we can order a tube. Wait 25 minutes to get him into the system. Wait 3o minutes for the tube. Try to get 8 ounces of water in him in the 30 minutes I have left before I need to start his milk. Only get 4 oz in. Start milk while waiting for appointment. Alex poops....YAY for poop no matter where I am. Get poop on stroller. ALex puts hands in poop. Alex puts hand in my mouth. Wait for appointment to start. Waiting, waiting, waiting.......45 minutes later appointment, still feeding milk. Appointment goes well, Alex is moving forward. Finish feed. Walk to car. Alex throws up.

Oh, you are CRACKING ME UP! You're right; we ARE exactly alike! And so are our babies!

OK, should I say it here? Nah, I'll save it for next Monday's post, where I can deny, deny, deny. But now that you've actually left truths here, I feel a need to confess!

But now you make me feel like laughing, instead of beating my head.

We go to cardio appt Wed. No, I take it back. I am drawing a big breath, and sending Daddy and the crew, and praying the kids remember to pull out the clipboard with my "messages" and also to remind Daddy to call me so I get my big fat input. The upside (besides the obvious, that I don't miss another day of work when I missed so much for the retreat)? I don't have to wait 3 hrs in the waiting room, for Cardio Man. Who is always late!

But the lack of control (ie, my intimidating presence in said appt) is killing me.

And I now have a "regular" diaper bag (the cute personalized on my friend Katha gave us) as well as our "emergency diaper bag." And we always have both with us when we go to Medical Center World. The emergency bag has extra Mickey tubing, extra neo extension tubing (for hanging for slow drip boluses), extra 60cc, 10cc & 5 cc syringes, a foley catheter in case the unlikely happens (button comes out and can't be put back in and reinflated or taped), extra diapers, extra wipes, bottles, nipples, packets of formula (which I would NEVER give her, since I'd be pumping), etc. It's my ultimate attempt-to-control-things-so-NOTHING-can-go-wrong-bag. Very stylish, but we leave it in the car when we get there. But if we needed it, we'd have it!

Not that we EVER forgot tubing or milk or syringes or diapers or anything, when we traveled to Medical Center World, 2 hrs from home!

And you know? I never, ever, in my wildest dreams, thought about asking if they had one we could have!!! I have to remember that ... but I do have my doubts. They couldn't even rustle up a diaper in last month's visit when we forgot to pack any (oh, OK... AND we forgot the emer diaper bag)!!!

Hey if you can clean the vomit, eat poop, live sleep deprived and all with a smile on your face than you are truley an inspiration. Your doing a great job! I know the Lord never gives us more than we can handle and I am praying that you may get 8 hours of sleep each night very soon.

Crack up. Sounds like one of our numerous visits. I rushed the hour up to ENT on Monday, after taking a half day off work, only to sit in the lobby for an hour. Why is that okay? And why do I wait? Or even bother showing up on time anymore? I keep a little emergency baggie in the bottom of the diaper bag with spare tubing, syringe, tape and water. Go make one right now! ;)

Paying it forward

My new normal

I am a mamma bear to 4 boys. I take each day as it comes even when the worst becomes reality. I was forever changed by my son's night shift nurse in 2007, she changed my life without saying a word. I have turned these mountains into victories by going back to school, and becoming a nurse, and will pay it forward until my journey ends with a little crossfit in between.

-Alex was born with Rubinstein Taybi Syndrome.Pulmonary hypertension at birth.Malrotation of the intestines.Uracheal cystPhase 2 kidney reflux (right side)Angulated thumbsmild near sighted in right eyedysphagiaPDA

-At five years old my son Max was diagnosed with type one diabetes. He depends on insulin, and each day is a job to stay alive, he is my hero.

About Me

In the middle of the night at my lowest moment my sons nurse touched my heart without saying a word. I went to school and I'm paying it forward. #newkindofnormal #RTS #typeonediabetes #nurselife #payitforward #crossfit #momswhocrossfit #nurseswhocrossfit